Re: hOW IS IT GOING?

Re: hOW IS IT GOING?

WE saw the doctors this week and we have been offered a place in 2 trials. One for photodynamic therapy and one a chemo trial. The PDT looks promising and since it is non-invasive we are definitely interested in this. I spoke to someone who works for the pharmaceutical co that manufactures the dye they use in PDT; he says that there are many centres in Europe that use this technique with colangio and it is effective in shrinking the tumour. In the US they use it less. We are also looking into lifestyle issues though now my husband has much of his strength back, it is difficult not to fall back into old habits. He spends time talking to work and we are putting off things that wqe should be dealing with.He is very calm and hopeful. He was four and half weeks in hospital and was very poorly. Naturally he is not keen to go back again. he has lost a lot of weight and several people have told us he will never regain it. I was recommended a high calorie drink that he has two times per day; cocnut milk plus almond milk with Whey protein and glucomine, which build muscle and I mix it with a banana. It is high energy and high protein which counteracts the muscle loss. He has gained a little weight and is eating normally.We are going to have another scan to see what the current situation is. In the meantime we just take every day as it comes.

Re: hOW IS IT GOING?

he came over to my house today and we were able to have a walk together on the beach this morning, it was lovely and sunny. He is not eating very well and is very tired all the time, also today he was very low, i think mainly because he was suffering from terrible nausea which really gets him down - however i think this is mainly due to the antibiotics that he is taking, i think he is also dreading the appointment tomorrow. I try to reassure him but i also want to be careful of not just dismissing his fears, i want him to feel that he can talk openly about how he is feelings however at the same time i really miss the person that he was, so strong and confident and i feel angry that that person has been taken away from me. I hope that one day that person will return. I checked out the Lance Armstrong foundation website - liverstrong which was a real comfort - so many inspirational stories.. however i don't have to just look on these websites to find people who have beaten the big c - one of my closest friends is now clear of breast cancer after having a mastectomy 5 years ago, another one of my friends father suffered pancreatic cancer and is still going 2 years after being told that he had 6 months to live, he went into a clinical trial, the tumor shrank and he was able to have it removed surgically. I would never accept the opinion of one dr on the situation. i have been thinking of you and your husband, have you thought about getting a second opinion as to whether the tumor could be removed surgically? - my dad's tumor had spread beyond his liver, stuck itself to his lung (destroying the diaphragm which had to be reconstructed), wrapped itself around the vena cava and adhered itself to his bowel and yet the surgeon was able to remove it. The surgery was tough, i am just hoping it was all worth it and it has not returned so soon.

Re: hOW IS IT GOING?

Patricia,

the drink that you are giving your husband sounds very nourishing, my dad has build-ups, he has lost alot of weight too. it is interesting that you have been told that your husband will never regain the weight that he has lost - i wonder why they think that this will be the case? - my dad has lost alot of weight also and now really feels the cold. the PDT sounds interesting especially if it could shrink the tumor, then maybe your husband could have it removed surgically?

Re: hOW IS IT GOING?

I was surprised to hear that your father had a resection because my husband had CT scans laparoscopy and MRI which showed that the lungs, liver, pancreas, gall bladder and the peritoneum were all clear. On that basis they decided to operate but once they looked inside the abdominal cavity they saw that there were 'deposits' on the omentum. (The covering of the small intestine) They were malignant and they decided that they could not proceed further since there was a spread. They told us the only options were palliative.

When did your father have the operation?

After my husband's operation, he had to have another procedure to open up the bile duct which was still blocked. After that he was SO ill. He couldn't eat or even drink anything he was weak and very nauseous. That lasted for a few days. After that he had no appetite and we had to take food into him twice a day to try to get him to eat. This lasted for about three weeks. Once he came home he was much better and has slowly regained his appetite. Now he eats normally.

When he first came home I was worried about his loss of weight and I phone Cancer options UK. They told me that he could be suffering from Cachexia and sent me the recipe for the drink. I will email it to you. He has this twice a day plus a lot of juiced vegetables and various supplements I have read about.

I don't now if my husband would even contemplate another operation even if he was told that it was possible. I was interested to hear about your father's friend who had pancreatic cancer, because that also has a poor prognosis.

My husband left hospital on the 13th Dec and we have spent all the time since then trying to build up his strength. He is still very thin (previously he weighed 12stone now he weighs 10.2) but he is gaining strength. This week we went for Chinese and today he did some time on the exercise bicycle.

WE don't know what is happening inside. He will have another scan soon and we will get the results of the latest blood tests.

I wish you all the best and I hope that ypour dad's appointment goes well tomorrow. I'll be thinking of you both. Please post tomorrow and let me know how he is. All the best P

Re: hOW IS IT GOING?

patricia,

thankyou for offering to send me the recipe for the drink. I will let you know how we get on today. It sounds as though you are doing a great job at helping to build your husband up. I am sorry that they decided that they could not remove the tumor - have you thought about getting a second opinion about this? - i can understand that your husband would be reluctant to undergo a second op, my dad found it very hard, however it was very different the second time, the nurses at the Bupa Hospital Leeds were so caring. Such a contrast to Hammersmith which was a nightmare. When does your husband start the PDT?

Re: hOW IS IT GOING?

Re: hOW IS IT GOING?

hi, everything was alot more optimistic today - my dad has been told that they think the enlarged nodes could actually be due to all the disturbance of the 2 operations and that it is unlikely to be regrowth of cancer in such a short space of time. the surgeon is scathing of the RFA treatment that my dad had during the first op - he says that RFA spreads cancer as they have to stick probes into the tumor to 'cook it' and that sticking things into the tumor helps to spread it - i have also heard that this is the reason why they do not do needle biopsys anymore. anyway, so for now we have a reprieve - my dad is going to see an oncologist, Prof Cunningham at The Royal Marsden specialises in gastrointestinal cancers. At Southampton they are offering a trial of xeloda for post resection patients. There is alot to think about. For now things seem more positive and we are all very relieved. How are things for your husband?

Re: hOW IS IT GOING?

I'm really pleased that your father has some more optimistic news.

I am interested in what your oncologist said about sticking things into tumours helps spread it. My husband had four attempts to penetrate the tumour to open up the bile duct. I must say that I thought surely that can't be good but his bilirubin was up to 600 at that point and I guess they didn't have a choice.

Prof Cunningham is very well known in this area. My GP has contacted him to ask if there are any new approaches to cc and we are waiting for a reply, in the meantime we are waiting for the PDT trial.

My husband is still in good form and eating well. He is of the opinion that to get better he needs to address lifestyle and emotional issues.

Re: hOW IS IT GOING?

Is your husband comfortable? - has he got a stent fitted? - initially my dad had raised bilirubin back in july last year when this all started and they were poking things around too and having great problems inserting a stent, eventually they fitted a metal one, initially they wanted to use plastic and we found out later that metal would have been more effective, they should have just inserted metal to begin with but were reluctant to on cost grounds. You seem to waiting a long time to start any treatment, is it a randomised trial? - has your husband been allocated to a group? Your husband sounds strong mentally.

I am interested to learn that you are also consulting Prof Cunningham - I was hoping that we could have an appt to see him, however have now been told that he only gives 'paper' second opinions via the GP - i will let you know what his advice is to my dad. Chemotherapy is a minefield, they just seem to be throwing anything and everything at it - if its worked on a more common cancer they'll give it a go. It is very hard to make any decsions.

Re: hOW IS IT GOING?

My husband has what they call internal-external drains. Narrow tubes that were inserted from the outside under the skin and through to the bile duct and opening up the duct to drain into the intestine. The bile is draining and the jaundice has practically gone. We are waiting for blood tests to see the level of the bilirubin. There are also drains on the outside of his body. These will be used for the PDT. Usually they use an endoscope, but since they were inserting drains they decided to leave two capped off drains on the outside of the body. The PDT is more effective the closer the light source is to the tumour so they will insert the light source from the outside and cover the tumour. (At least that's what I understand.)

Today I am going to hurry them along . he needs another scan to see if there have been any changes since Nov and also I would like to see the blood tests, to see what is happening there. In the meantime because he is generally in good form we do have the feeling 'If it ain't broken don't fix it'. but we know we have to fix it.

As I understand it with your dad, he has had a resection and the option of chemo is just to be doubly sure, - to make sure that there are no traces. Is that right? Once you start a treatment if it has too mnay side effects you can always pull out and if it is just to 'mop up' rogue cells then the treatment might not take a long time. Whatever the case, I agree that the doctors are not much/any wiser than we are. I told the oncologist about a trial at the University of Leicester for X119 and he didn't even know about it.

Also, I have a fantastic GP - who used to work at the Marsden, he said to me to take what oncologists say with a pinch of salt. He thinks by prefession they have to be optimistic and they tend to minimise the side effects of the various drugs they prescribe. Talk to other people who have first hand experience of these drugs if you possibly can.

Re: hOW IS IT GOING?

hi patricia,

i don't seem to have recieved the email with the recipe - thankyou for trying. Yes, the chemo would be used as a 'mop up'. What is X119? - is it a form of nanotherapy or immunotherapy? The pace of research in this area moves so fast some drs seem more up to date then others and i feel like i have been on a very steep learning curve! it helps to have a good GP, my dad changed GP's after his original GP continually let him down by failing to diagnose him last year and sending him away repeatedly even though he was bright yellow and in agony with the itching. The GP he has now is very helpful. Is your husband at home now? it does get tiring when you have to keep chasing up treatments. I found when my Dad was in Hammersmith that the communication was dreadful - suddenly porters would appear to eg - take my dad for a chest xray and nobody would have told us about it, it adds to the anxiety.

Re: hOW IS IT GOING?

I did send the recipe but from an email I use for signing up, where I suspect that I might get a lot of spam. The sender name will be Andrew Vaughan, which is not my name --or gender for that matter!!. Perhaps you thought it was spam and deleted it. I will send it again after I finish this post.

X119 is another chemo trial which is being run all over the world. Pref Stewart in Lecicester is in charge of the trial here. If you google X119 you will get the links. If I have made a mistake I will check it out (I just did a check and I have the details wrong. I'll look it up in my file and post later today.)

We have an excellent GP. He comes to visit my husband once a week and even went to see him in the hospital. Incidentally he says that in over 20 years of practice this is the first case of cc he has seen. We had a reply from Dr Cunningham saying he can offer no more than we have been offered at the Royal Free. I guess he gets lots of letter like the one we sent.

Some good news today; the blood tests taken last week were all more or less within a normal range. That makes me feel hopeful and gives me confidence that something we are doing may be the right thing.

I'll send the email again now. and get back to you later with the trial info.

Re: hOW IS IT GOING?

thanks for trying again - i am unable to open the attachment as it has been 'viewed as unsafe' by my computer for some reason.

You must feel encouraged by the blood results, it sounds as if you are working hard on diet and lifestyle, all the hard work is starting to pay off. My Dad was put in contact with a firend of my brothers who suffered primary liver cancer who managed to shrink his tumors by eating a macrobiotic diet (the meals were prepared specially for him) i think macrobiotic includes lifestyle techniques too. I tried to encourage my dad to try it but he is reluctant as he has been told to 'just eat what you feel like' and his appetite is not good so he feels that he wants to eat whatever and whenever however he has become a vegetarian.

Did Prof Cunningham give you an idea of which chemo drugs are working well in trials right now? i think that it is interesting to note that that most chemo drugs used on cholangio are used initially for colon and pancreatic cancer, surely then it would be an idea to find out the latest drugs being used for these cancers and try them? I'm sure Prof Cunningham is very busy, his secretary told me that he sees alot of cholangio patients. I just wish that they could focus more on this rarer form of cancer rather then leaving the gap in provision as wide as it currently is. The numbers of cholangio patients are increasing - my Dad's GP has told my parents that he has 3 patients suffering cc (my parents only live in a very small village)..you start to wonder why. My Dad travelled alot to the Middle East during his career, i have read that cc has been linked with this 'liver fluke' present in these countries. No point going over this now i suppose, by the way, if you don't mind me asking how old is your husband? - my dad is 61.

Re: hOW IS IT GOING?

When my husband - who is 66 came back from hospital, we ignored the issue of diet - a lot of cancer diets involve raw vegetables and little or no fat or protein - and simply concentrated on building up his strength and I hoped his weight. He has gained a little weight but not much but he is much stronger. He doesn't have any dairy products or beef, very little lamb and once or twice a week chicken or turkey. We try to eat a lot of fish especially oily fish. He tries to eat protein and vegs, carbs and veg but not mix carb and protein; we don't always stick to that regime. he drinks coffee and tea but only in the morning.

When he first came back I phoned Cancer Options UK and spoke to someone there. It was she who gave me the recipe for cachexia - which I will include in the body of the email next time - saying that although it is not in line with many theories about what cancer sufferers should have, it was more important to build him up and get him back to normal. I agreed with her and I think in this respect at least, it was the right decision.

We have porridge and toast every morning. I add something called Linusit to the porridge it is flax seed which is very good for him - as is omega 3 and 6. When he was first back I would make pancakes and french toast for breakfast, because they were fried (calories) and the eggs had protein and he likes pancakes. Only soy milk to drink. Lunch we would have starch and veg - lots of veg / salads and in the evening protein - usually fish and often fried with soup for starter and fruit for dessert. (I have put on weight even if he hasn't!!!)

Mid morning I would make the high protein high energy drink he would drink one in the morning and one later in the day. Every day I make a juice with carrots celery beetroot and red/yellow peppers. (sometimes with parsley or watercress) which is full of anti oxidants. Over the weeks his appetite had increased and last week we were able to eat out at a chinese restaurant.

Before the diagnosis when he lost his appetitie completely, one of the few things he could eat were carrots and I have read that carrots are very good for the liver.

Interestingly my husband was at university in Israel and the incidence of this disease there is higher than in other countries - and my gastroenterologists said it is also high in Eygpt.

We are now trying to decide whether or not to have the chemo on offer. I think it will pretty much depend on what the next scan shows.

Re: hOW IS IT GOING?

your diet sounds very nutritious, i have bought the ingredients to make the drink for my dad, he says that he is looking forward to it. it seems obvious to me that diet plays such an important role. i have always taken great care with my diet in that i am vegetarian and will only buy organic, since my dad became ill i find myself examing ingredient labels on everything very rigidly - i now use bicarb soda and lemon for cleaning the bathroom and but tioletries from the health shop, i know that there is little i can do about pollution but i do have control over some elements of my life.

alot of research into this disease seems to originate from the far east where incidents are far more prevalent and you do have to wonder why it is spreading to the west. Is your husband able to exercise? - my dad has been enjoying getting out for a walk but will only go out when the sun is out - he really does feel the cold.

Re: hOW IS IT GOING?

Hi Jules,

He's had a very busy week with lots of visitors and activity. It tired him out and in future I am going to keep a very close eye on the level of activity. He needs more calm and stillness in his life. This week has been quite busy; we saw the oncologist on Wednesday and we have decided not to enter the trial of gemcitabane vs gemcitabane and cisplatin.

My husband hasn't had a scan since Oct when he was diagnosed and they offered us an appointment mid March. I was so shocked at the time lag, I didn't even bother to argue. We have decided that the NHS simply cannot deliver the level of service and we are going to look for private treatment. Today we are going for an appointment to have PDT hopefully to start next week - but I have got so used to delays and disappointments that I am not going to get my hopes up too high.

We are planning a visit (and stay) at the Bristol Cancer Centre. My husband is a very spiritual person and he believes that the body can be geared up to fight its own disease. WE watched the video from the centre together and unlike so much else in this field the messages are positive and hopeful.

It's good news that your dad is putting on weight. i wish I could see some change in my husband. As for exercise he tries to do some at home but doesn't like going out in the cold - and it is very cold in London at the moment.

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